Discussions By Condition: Gastrointestinal conditions

No Diagnosis For Mom After 7 1/2 Years of Gastrointestinal Testing

I am writing as the concerned daughter of a mom with no diagnosis. It all started 7 1/2 years ago when she said that her stomach felt upset. Over the course of that year she deteriorated to the point where she could not even drink water and ended up in the hospital where she had her galbladder removed. She felt slightly better and started on a steady diet of eggs, white toast, low fat cottage cheese, low fat milk, and low fat vanilla ice cream. These are the only foods she has been able to eat. She deteriorated again 4 years ago and ended up on TPN for a year. Since then, she has gone back to the diet of foods mentioned above.

Her symptoms are strange and include uncontrollable burning (this never goes away but is subdued by lyrica), overwhelming sense of fullness, never being hungry, nausea, itching, rashes and hives throughout the day that get worse after she eats, constipation, cold intolerance and fatigue.

She has clear cat scans, normal organ functions, normal blood work and normal urine. She has also had 5 normal endoscopies and 2 normal colonscopies. She has been tested for food allergies and does not have any. She has also been tested for Crohn's disease, carcinoid, thyroid disease, autoimmune dieases, mastocytosis, cancers, bowel obstructions, celiac disease all of which have been ruled out to this point.The only positive test she has had was an ulcer in her lower gigunum during a camera endoscopy.

She is an identical twin and her twin has similar but less severe symptoms.I would appreicate any feedback. Thanks!

1 Replies:

Have her tested with genetic DNA testing for celiac. I has a false blood and scope for celiac. After the genetic testing I found out I am HLA DQ2 celiac. I also had terrible rashes and itching, cold intolerance and fatigue. It is all part of celiac.